Well 20 years ago, we'd just arrived at our wonderful hotel in St Lucia - blue skies, blue sea, sun, palm trees. Tonight, we'll be spending the evening in front of the TV (catching up with Downton Abbey if I get my choice. Michael wants to watch Nathan's Bar Mitzvah dvd which we only just got back - too much emotion there and I'm not sure if I want to spend the evening in tears), just the two of us. The kids are round at friends celebrating but as much as we love our friends and their kids, too much risk of catching germs, so it's just the two of us and Waffle.
Michael had a hair cut yesterday and looks soo much better. Shame he's not feeling it though - bit of a tummy ache all day. No point in asking why, cause who knows?!? He has been doing ok with food, although he does still treat me like the ogre when I place a plate (always a small one) in front of him. Yesterday he managed a small piece of chicken and a roast potato; today we had a snack lunch as we'd had such a late breakfast (actually, I've just realised he skipped breakfast). I split the remains of Lauren's birthday cake between him and Lauren. Cannot describe the look on his face but the 'uh' said it all. We had tea at Michael's sister, although he refused the rolls and went for crackers instead (can people become addicted to crackers?). Maybe the only reason he's just told me that he's had a stomach ache all day is to preempt his refusal of supper.
My task when the kids return back to school and we go back to some order of assemblance is to ensure he starts eating more. Because I was out the house this morning whilst he was showering, by the time I got home I didn't think about breakfast and naturally, neither did he. In the usual Michael way, he's very happy with his tube feed - it's easy, no chewing required. The Nutritionist did ask last week how many calories he thought he was eating - honestly have no idea. Wouldn't know how many calories in a slice of chicken, or a piece of birthday cake, a slice of smoked salmon. Michael's writing it all down and I assumed the hospital would work out what the daily calorie intake was. I have no idea what they are aiming for before they can start to reduce his feed.
We're still trying to work out whether it's the feed that's increasing his major stoma output and the hospital have suggested he puts the feed on slightly later and sees what the effect is. Last night we were at friends for supper. Shortly after Michael attached himself to the feed, he had to make a major dash to the loo as he said his stoma was streaming out. I sat round the table with our friends trying to work out why this would happen (everyone's a Doctor!!) - we deduced that it obviously wasn't the feed itself as there was more out put than input. Perhaps he's now suffering with irritable bowel (how cruel would that be) - but our final diagnosis???? Absolutely no idea. Meanwhile, Michael dealt with it all very calmly - obviously makes a difference when you're with friends. Sure he wouldn't have felt the same if we'd been out at a restaurant or in a meeting (and he won't be for some time!). 7 weeks ago he couldn't even look at the stoma and now it's become dinner conversation.
I have to change Michael's Picc Line dressing each week and clean the area. It's been a weekly event for over a year now - first with his original Picc, then his Hickman and now with the new Picc. Removing the old dressing is quite painful although less so that when I had to remove it from his Hickman which was on his hairy chest. I've now got to flush his TPN line (Picc is split in two - one for his drugs and the other for the TPN which thankfully has never had to be used) with Hepsal which stops any clogging up of the line. Michael does all his drugs himself so it's been a while since I've had to administer anything - little bit out of practice. Changed all the dressings and then filled the syringe with the Hepsal. Minor fault, forgot to take the needle out (obviously I'm not injecting into his skin so not needed) - although I would have obviously noticed when I went to inject. Michael was not happy with my faux pax - he's getting really good at giving me 'the look'. I calmly took the needle out so I could carry on with the injection but I get the feeling he'll be watching more closely next time. He's so not as laid back as he used to be - I've become the calming influence (and that's quite something). Michael is definitely more panicky - worrying about every little change (and error made by his wife!). I do seem to spend more time trying to reassure him. Perhaps I'm just getting to realise what there is to panic about and what we can ignore (or maybe that should be panic less about rather than ignore).
2011 has somewhat of a rollercoaster:
The beginning of January we were expected to carry on our lives as normal (Michael feeling sick all the time, on tpn and not able to work).
By the end of January, having sought a second opinion in New York, we were on the road to bowel transplant.
February took us to Oxford for an initial consultation. We went very apprehensively, believing there was no way we'd every have surgery anywhere but the States. Having been completely bowled over by the Surgeon, it looked like transplant (if approved) was going to happen in Oxford.
March was the beginning of it all, with provisional tests.
By June, we knew it was a 'go' and we just had to wait for confirmation on whether Michael needed a new stomach and pancreas as well.
July was a real break from it all with the wonderful celebrations for Nathan's Bar Mitzvah.
August was the most amazing family cruise to celebrate my parents' 50th.
Back home, confirmation of bowel only - then on the list and 'waiting'.
8 October 2011 - the true rollercoaster began.
To you all, we wish you a healthy & happy New Year.
Let's see what 2012 brings.......
xx
31 December 2011
29 December 2011
Thursday morning
I'm back!!! I know it's been quite a few days since I've blogged but although it's been the restful holiday season, I don't seem to have had a minute to myself. In true form we've been sleeping in, seeing family and friends, chilling, watch tv and eating too much. And there's me saying I haven't had any time!
May sound all quite normal for us, but it's been hard for Michael. Sunday, we were with my family and he coped with the day very well. Had a little lunch, fell asleep in the armchair for the afternoon and the planned walk with my Dad never happened!! To be honest, he wouldn't have done anything different at home. It was just lovely us all being together, out of the house.
Monday we were with good friends in the afternoon - another relaxing day. By 7pm though Michael was tiring - he hadn't managed the afternoon armchair sleep and felt he just needed some quiet time. He was happy for me to take him home (gave me an opportunity to give poor Waffle a quick walk) so he could sort his feed and stoma out, and I went back to our friends. At one point when our eldest saw Dad and me getting ready to leave, he did resign himself to the fact that they were also leaving and I could see the disappointment in his face, knowing that everyone else was staying but, as always, our famiy were leaving first. The relief on his face when I said they were staying and I was coming back. Poor kids - they're so used to the Seres always leaving earlier than everyone!!
Did then get an aggitated bbm from Michael - his output had increased tremendously since getting home and he was a bit concerned. We both agreed there was no point in panicking - it could all wait til Wednesday's hospital visit.
Tuesday was the kids' treat to the theatre. On the way there we passed the Wellington Hospital - told the kids that 23 years ago, when Daddy and I first started going out, that's the hospital he was in. Whereas most people show their kids the romantic places in their parents' past, we can show our kids all the hospitals Daddy's been in!!
Billy Elliot - fabulous!! Unfortunately poor Michael couldn't come. I know if I was a nicer person, I would have booked out the whole theatre so there was no chance of getting anyone's germs. Maybe when we're both working again I'll think about that one. We had a lovely time and yes, the four of us are quite used to going out without Michael, but it's such a shame and so unfair.
Yesterday was our baby's 12th birthday and where was Michael? At the hospital - great timing. Although, when she was born, he'd only just come out of hospital after another operation and about half an hour after she popped out he went home cause HE was tired!! And then, for the next 3 years, on her birthday, he was back for further surgery. Still remember schlepping this little pink bundle on the train and up the stairs (amazing how no one ever helps a lady with a buggy!!) to visit Daddy in hospital. Anyway, just knowing that Daddy was going to be there, at some stage on her birthday was good enough for Lauren. He may have missed the present opening ceremony (like she was going to wait!) but he was there for our takeaway and movie in the evening and she was more than happy.
Having just read the above myself, it sounds like all is going great, and it is, to a point. Michael's home which is fab but he's finding that difficult. His morning regime takes a good hour (although I did notice it's getting quicker each day) and he's got to constantly monitor his input and output (from all directions!). He did mention at hospital yesterday how hard the whole 'home' thing is and they did ask whether he'd like to be in hospital instead - absolutely not. I just think neither of us appreciated how tough it would be. We assumed that coming home from Oxford meant that he would be over the worst. That's definitely not the case - knowing that the 'rejection' period still isn't over and waiting on every test reslt, not knowing what the Doctors are going to say - whether they'll call him in for another period of hospitalisation, is draining and constantly worrying. Yes - we do have periods when we (sort of) forget about bowels but it's never for very long.
Today is our 20th Anniversary (really really can't believe it's 20 years!!) and there we were lying in bed reading each others anniversary cards, and how to kill the moment - Michael pulled out his little diary to write down his stoma output for the night. Romance is so not dead!!! It really has been a rollercoaster 20 years - can't even begin to calculate how many times I've visited Michael in hospital in that time but we can only hope the next 20 years will, in time, include far less hospital visits!!
May sound all quite normal for us, but it's been hard for Michael. Sunday, we were with my family and he coped with the day very well. Had a little lunch, fell asleep in the armchair for the afternoon and the planned walk with my Dad never happened!! To be honest, he wouldn't have done anything different at home. It was just lovely us all being together, out of the house.
Monday we were with good friends in the afternoon - another relaxing day. By 7pm though Michael was tiring - he hadn't managed the afternoon armchair sleep and felt he just needed some quiet time. He was happy for me to take him home (gave me an opportunity to give poor Waffle a quick walk) so he could sort his feed and stoma out, and I went back to our friends. At one point when our eldest saw Dad and me getting ready to leave, he did resign himself to the fact that they were also leaving and I could see the disappointment in his face, knowing that everyone else was staying but, as always, our famiy were leaving first. The relief on his face when I said they were staying and I was coming back. Poor kids - they're so used to the Seres always leaving earlier than everyone!!
Did then get an aggitated bbm from Michael - his output had increased tremendously since getting home and he was a bit concerned. We both agreed there was no point in panicking - it could all wait til Wednesday's hospital visit.
Tuesday was the kids' treat to the theatre. On the way there we passed the Wellington Hospital - told the kids that 23 years ago, when Daddy and I first started going out, that's the hospital he was in. Whereas most people show their kids the romantic places in their parents' past, we can show our kids all the hospitals Daddy's been in!!
Billy Elliot - fabulous!! Unfortunately poor Michael couldn't come. I know if I was a nicer person, I would have booked out the whole theatre so there was no chance of getting anyone's germs. Maybe when we're both working again I'll think about that one. We had a lovely time and yes, the four of us are quite used to going out without Michael, but it's such a shame and so unfair.
Yesterday was our baby's 12th birthday and where was Michael? At the hospital - great timing. Although, when she was born, he'd only just come out of hospital after another operation and about half an hour after she popped out he went home cause HE was tired!! And then, for the next 3 years, on her birthday, he was back for further surgery. Still remember schlepping this little pink bundle on the train and up the stairs (amazing how no one ever helps a lady with a buggy!!) to visit Daddy in hospital. Anyway, just knowing that Daddy was going to be there, at some stage on her birthday was good enough for Lauren. He may have missed the present opening ceremony (like she was going to wait!) but he was there for our takeaway and movie in the evening and she was more than happy.
Having just read the above myself, it sounds like all is going great, and it is, to a point. Michael's home which is fab but he's finding that difficult. His morning regime takes a good hour (although I did notice it's getting quicker each day) and he's got to constantly monitor his input and output (from all directions!). He did mention at hospital yesterday how hard the whole 'home' thing is and they did ask whether he'd like to be in hospital instead - absolutely not. I just think neither of us appreciated how tough it would be. We assumed that coming home from Oxford meant that he would be over the worst. That's definitely not the case - knowing that the 'rejection' period still isn't over and waiting on every test reslt, not knowing what the Doctors are going to say - whether they'll call him in for another period of hospitalisation, is draining and constantly worrying. Yes - we do have periods when we (sort of) forget about bowels but it's never for very long.
Today is our 20th Anniversary (really really can't believe it's 20 years!!) and there we were lying in bed reading each others anniversary cards, and how to kill the moment - Michael pulled out his little diary to write down his stoma output for the night. Romance is so not dead!!! It really has been a rollercoaster 20 years - can't even begin to calculate how many times I've visited Michael in hospital in that time but we can only hope the next 20 years will, in time, include far less hospital visits!!
25 December 2011
Christmas Day!!
Happy holidays!!
Already feeling guilty about yesterday's blog, although I'm going to blame Michael for moping rather than just saying he felt rough.
Today is already a better day - a few smiles. Even came downstairs (having spent over 1 hour getting himself washed and sorted) and said he wanted something to eat. Was that for my benefit or his - whatever, he had a piece of toast with banana.
Justine
read my blog:www.the-transplant-wife.blogspot.com
24 December 2011
Saturday Evening
I feel a little redundant now - what can I tell you about Michael's progress that he hasn't already told you in his blog?? Well, at least you all know my name as I notice he only ever refers to me as the 'my wife'!!!! Think perhaps I'll start referring to him as the 'grumpy patient'.
Think my job now will be to tell you how things are in our daily life now that Michael is home. I'd love to say it's fabulous and our life is returning to some sort of normality, but the truth is..... it's not. Yesterday we celebrated my Dad's 80th - we all went our for lunch but, no Michael. He was obviously in Oxford (and even if he wasn't, he wouldn't have been with us as too many people in the restaurant) so as lovely as it is that he's home, he still can't be part of our daily routine. Had a lovely afternoon with all the family whilst poor Michael was on his own (having returned from his tests) - how sad is that?
Today, again, Michael hasn't been feeling fantastic (maybe he's allergic to home) and to be honest has been a bit of a grouch. When he was in hospital and feeling yuck, I think it would cheer him up that I was coming to visit and he was thrilled to see me. We'd go on our little jaunts and have some quality time. Now we're together, there's no smiles when he sees me in the morning, perhaps a couple of grunts and then he's back to moping round the house. I came home after a long walk with the dog today, ready to join Michael on a short walk, and he'd fallen asleep. So much for that idea. Then when I did suggest it, he told me he wasn't up to it today, with a look of disdain. I haven't given up though - nothing like wrapping up warm and having an evening stroll.
Michael's great intention of becoming a better eater hasn't happened yet. I hope there is a time when he starts to actually think about food. If I didn't pass anything under his nose, he'd be more than happy to rely on his 'feed'. And remember that saying 'if looks could kill' - that's what I get when I do serve him up something. He's so used to sitting at the table and watching us eat, he really doesn't expect to get any food at all. It's terribly hard trying to help him.
My Mum actually bought some Manuka Honey for him (meant to be very good for you). One spoonful a day (although I will check with the hospital before he has it). You wouldn't think that was so hard. OMG you would have thought I'd told him he had to eat mud every day. Meanwhile if I'd told him he had to take 10 extra tablets a day, or even have another injection, he'd happily agree.
Maybe it's because I thought he'd be stronger when he eventually came home, but it was all much easier when he was in hospital. That must sound awful, and don't get me wrong, I obviously want him home, but that's just how it seems at the moment. Guess (hope!) things can only get better.
PS. He's just catching up with my blog and only up to day 5 after the op. Hopefully by the time he gets up to today's blog, all will be better :)
Think my job now will be to tell you how things are in our daily life now that Michael is home. I'd love to say it's fabulous and our life is returning to some sort of normality, but the truth is..... it's not. Yesterday we celebrated my Dad's 80th - we all went our for lunch but, no Michael. He was obviously in Oxford (and even if he wasn't, he wouldn't have been with us as too many people in the restaurant) so as lovely as it is that he's home, he still can't be part of our daily routine. Had a lovely afternoon with all the family whilst poor Michael was on his own (having returned from his tests) - how sad is that?
Today, again, Michael hasn't been feeling fantastic (maybe he's allergic to home) and to be honest has been a bit of a grouch. When he was in hospital and feeling yuck, I think it would cheer him up that I was coming to visit and he was thrilled to see me. We'd go on our little jaunts and have some quality time. Now we're together, there's no smiles when he sees me in the morning, perhaps a couple of grunts and then he's back to moping round the house. I came home after a long walk with the dog today, ready to join Michael on a short walk, and he'd fallen asleep. So much for that idea. Then when I did suggest it, he told me he wasn't up to it today, with a look of disdain. I haven't given up though - nothing like wrapping up warm and having an evening stroll.
Michael's great intention of becoming a better eater hasn't happened yet. I hope there is a time when he starts to actually think about food. If I didn't pass anything under his nose, he'd be more than happy to rely on his 'feed'. And remember that saying 'if looks could kill' - that's what I get when I do serve him up something. He's so used to sitting at the table and watching us eat, he really doesn't expect to get any food at all. It's terribly hard trying to help him.
My Mum actually bought some Manuka Honey for him (meant to be very good for you). One spoonful a day (although I will check with the hospital before he has it). You wouldn't think that was so hard. OMG you would have thought I'd told him he had to eat mud every day. Meanwhile if I'd told him he had to take 10 extra tablets a day, or even have another injection, he'd happily agree.
Maybe it's because I thought he'd be stronger when he eventually came home, but it was all much easier when he was in hospital. That must sound awful, and don't get me wrong, I obviously want him home, but that's just how it seems at the moment. Guess (hope!) things can only get better.
PS. He's just catching up with my blog and only up to day 5 after the op. Hopefully by the time he gets up to today's blog, all will be better :)
22 December 2011
Thursday Evening
Haven't blogged for a couple of days - know Michael's back to blogging and I didn't want to overshadow his blog!!
So nice on Tuesday when the kids came home - they had absolutely no idea that Daddy was coming home as we only found out late morning. Nathan was sitting in the TV room with his friends when he saw Michael's dad's car coming into the driveway. Was beside himself with excitement when he realised Daddy was also in the car - 'my Dad's home', and ran to greet him at the door (together with the faithful dog at his heels!).
Lauren was dropped home by a friend - and had absolutely no idea whatsoever that he was home, until she walked into the kitchen. Another cuddle for Daddy.
Then when I brought Aaron home I told him there was something (as opposed to someone) upstairs for him. How lucky can one man be with so many people happy to see him. I should be grateful for the 'hi' that I got from them!
So how's it been having him home? Well, it's been more than 48 hours - which is longer than last time. Can't say it's been problem free though - have to say, I am feeling a bit stressy with it all. Evening 1 was absolutely fine with no hiccups but last night, after dinner (1 meatball), he had the most terrible tummy ache with a huge stoma output which continued overnight. I won't go into major detail as Michael's been quite detailed in his blog (bit of encouragement to read it if you haven't already). Anyway, he did speak with the hospital today and they aren't hugely concerned as they say it could be anything, even different foods which are affecting things. So for the rest of the day we have been assessing all the foods Michael has eaten - to be honest, it would be impossible to figure out what, if anything has had this effect. It's only going to be by trial and error that we know if there are foods which aggravate things.
Meanwhile, output slowed down completely during the day but after dinner (salmon pate) there's been a huge increase again. I just feel that we're constantly in 'standby' mode for problems - will we ever just be able to relax and enjoy a day? I'm sure we will but it does feel that each time Michael comes home, something changes. In time I guess we'll get used to what's normal and what's not. Although our life never seems to follow that normal path!!
Have to say though it is nice to have 5 of us in the house again. We're taking things very easy; kids are seeing friends, etc so Michael's having some quiet time at in the house.
We'll see what tomorrow brings as it's back to the hospital for blood tests and they'll also decide whether to do another scope/biopsy.
Look forward to giving some positive news tomorrow.
Night xx
So nice on Tuesday when the kids came home - they had absolutely no idea that Daddy was coming home as we only found out late morning. Nathan was sitting in the TV room with his friends when he saw Michael's dad's car coming into the driveway. Was beside himself with excitement when he realised Daddy was also in the car - 'my Dad's home', and ran to greet him at the door (together with the faithful dog at his heels!).
Lauren was dropped home by a friend - and had absolutely no idea whatsoever that he was home, until she walked into the kitchen. Another cuddle for Daddy.
Then when I brought Aaron home I told him there was something (as opposed to someone) upstairs for him. How lucky can one man be with so many people happy to see him. I should be grateful for the 'hi' that I got from them!
So how's it been having him home? Well, it's been more than 48 hours - which is longer than last time. Can't say it's been problem free though - have to say, I am feeling a bit stressy with it all. Evening 1 was absolutely fine with no hiccups but last night, after dinner (1 meatball), he had the most terrible tummy ache with a huge stoma output which continued overnight. I won't go into major detail as Michael's been quite detailed in his blog (bit of encouragement to read it if you haven't already). Anyway, he did speak with the hospital today and they aren't hugely concerned as they say it could be anything, even different foods which are affecting things. So for the rest of the day we have been assessing all the foods Michael has eaten - to be honest, it would be impossible to figure out what, if anything has had this effect. It's only going to be by trial and error that we know if there are foods which aggravate things.
Meanwhile, output slowed down completely during the day but after dinner (salmon pate) there's been a huge increase again. I just feel that we're constantly in 'standby' mode for problems - will we ever just be able to relax and enjoy a day? I'm sure we will but it does feel that each time Michael comes home, something changes. In time I guess we'll get used to what's normal and what's not. Although our life never seems to follow that normal path!!
Have to say though it is nice to have 5 of us in the house again. We're taking things very easy; kids are seeing friends, etc so Michael's having some quiet time at in the house.
We'll see what tomorrow brings as it's back to the hospital for blood tests and they'll also decide whether to do another scope/biopsy.
Look forward to giving some positive news tomorrow.
Night xx
20 December 2011
Tuesday
Well - after a further 12 day stint in Oxford, Michael is coming home today. Let's hope it's for a bit longer. Michael's scope/biopsy last week showed that there is no improvement with the rejection, although no worse. He started his new drug yesterday which is to stop the antibodies which he is producing. They have now actually sent his latest results to Miami for a second opinion. They are of the same thinking and believe that nothing more needs to be done in hospital and it's just a case of regular blood tests. With such a new operation there are no definitive answers but I guess a second opinion from somewhere that has undertaken so many more bowel transplants is positive.
He'll have to return this Friday and next Wednesday. Both of which are inconvenient days - my Dad's 80th and our baby's 12th, but better than him being in Oxford over the holiday period and having to schlepp there the whole time.
Obviously excited about the 'homecoming' but very apprehensive now having experienced it once and then it all 'falling apart'. If I remember correctly, he came out of UCH last year the same day as the kids finished school - bit deja vu.
He'll have to return this Friday and next Wednesday. Both of which are inconvenient days - my Dad's 80th and our baby's 12th, but better than him being in Oxford over the holiday period and having to schlepp there the whole time.
Obviously excited about the 'homecoming' but very apprehensive now having experienced it once and then it all 'falling apart'. If I remember correctly, he came out of UCH last year the same day as the kids finished school - bit deja vu.
17 December 2011
Saturday Evening
I must apologise if this blog is slightly (or may extremely) incoherent. It's been a busy week (not just driving back and forth to Oxford) and I'm beyond tired. Seem to be dragging myself through the days at the moment with very little energy for anything much. Having looked forward to bed every evening for the last few weeks, that's not even particularly inviting now as I know I don't have enough hours there. Guess I'm wallowing in a bit of self pity at the moment - although not really sure I have enough energy for that either!!
As lovely as it was this morning to wake up to a bright and sunny (if not cold) day, it just put me in a worse mood as it showed up how dusty the house really is. Seemed to be keeping up with everything until last week and now I'm just on a constant go slow. Now know how I'll be spending the majority of the day tomorrow.
Usual visit to Michael today. Did have a moment (well actually it was quite a few hours last night) when I thought I'd give today a miss. Two weeks ago I thought it was going to be our last weekend visit and here we are now still going. Felt guilty though when he texted to ask what time we'd be there. What else would we have to do? So off we trotted...... again.
I don't believe that Thursday's biopsy results came through yesterday but the latest bloods show Michael is building up antibodies to the new organ. Michael did explain it to me in a little more detail but I have to admit (as terrible as it sounds) that I sort of switched off, thinking 'something else to add to the list'. He'll start a new drug on Monday to counteract this - not sure how long til it works or whether it's an ongoing thing. Sure I'll find out more (when I listen properly!) on Monday when we see the Doctors. They did give him the option to come home for a day at the weekend but neither of us could really see any benefit. And to be honest, the hospital was so quiet today - it's not like we were interrupted at any stage by anyone. Didn't see his nurse the whole afternoon (thankfully it's not like he needs anything apart from drug time). We went for a short walk (inside) and then chilled for a bit at the little League of Friends Coffee Shop - only us as it was closed!! But nicer than spending the entire afternoon in the room.
Problem with Michael having been 'institutionalized' for so long is that he's forgotten what life at home is like. We eventually got home, I sorted the mess that seems to always be there, delivered 1 child to party, made dinner, cleared up, etc, etc, and then received a text from darling husband to ask what I thought of Strictly. Well, did I tell him what I thought - reminded him that our slave was away for the weekend so I hadn't actually sat on my bum since leaving him (apart from in the car). Think he got the message!! That's just what my life feels like at the moment - non-stop, without any time to think :(
Like to think Michael will be home this week but what's the point of getting my hopes up. So much for him having time at home before the kids break up. I've resigned myself to the fact that he'll be home..... whenever. Meanwhile, I'll keep on trekking back and forth like a yo-yo (not one of those lovely glossy ones but a dull, tired looking one, where the string's a little worn).
Good night - I know I'll sleep tight but just not for long enough xx
As lovely as it was this morning to wake up to a bright and sunny (if not cold) day, it just put me in a worse mood as it showed up how dusty the house really is. Seemed to be keeping up with everything until last week and now I'm just on a constant go slow. Now know how I'll be spending the majority of the day tomorrow.
Usual visit to Michael today. Did have a moment (well actually it was quite a few hours last night) when I thought I'd give today a miss. Two weeks ago I thought it was going to be our last weekend visit and here we are now still going. Felt guilty though when he texted to ask what time we'd be there. What else would we have to do? So off we trotted...... again.
I don't believe that Thursday's biopsy results came through yesterday but the latest bloods show Michael is building up antibodies to the new organ. Michael did explain it to me in a little more detail but I have to admit (as terrible as it sounds) that I sort of switched off, thinking 'something else to add to the list'. He'll start a new drug on Monday to counteract this - not sure how long til it works or whether it's an ongoing thing. Sure I'll find out more (when I listen properly!) on Monday when we see the Doctors. They did give him the option to come home for a day at the weekend but neither of us could really see any benefit. And to be honest, the hospital was so quiet today - it's not like we were interrupted at any stage by anyone. Didn't see his nurse the whole afternoon (thankfully it's not like he needs anything apart from drug time). We went for a short walk (inside) and then chilled for a bit at the little League of Friends Coffee Shop - only us as it was closed!! But nicer than spending the entire afternoon in the room.
Problem with Michael having been 'institutionalized' for so long is that he's forgotten what life at home is like. We eventually got home, I sorted the mess that seems to always be there, delivered 1 child to party, made dinner, cleared up, etc, etc, and then received a text from darling husband to ask what I thought of Strictly. Well, did I tell him what I thought - reminded him that our slave was away for the weekend so I hadn't actually sat on my bum since leaving him (apart from in the car). Think he got the message!! That's just what my life feels like at the moment - non-stop, without any time to think :(
Like to think Michael will be home this week but what's the point of getting my hopes up. So much for him having time at home before the kids break up. I've resigned myself to the fact that he'll be home..... whenever. Meanwhile, I'll keep on trekking back and forth like a yo-yo (not one of those lovely glossy ones but a dull, tired looking one, where the string's a little worn).
Good night - I know I'll sleep tight but just not for long enough xx
15 December 2011
Thursday 3.30pm
Feel a little 'pushed out'. Michael having a scope to get a biopsy - having it today in the hope that results come back tomorrow. Rather than seeing if it's getting better, more to check not getting worse. Michael did ask what's the plan if no worse, but he was unwilling to say. Meanwhile, I was asked to leave the room - I know Michael was happy for me to be there so do feel a little aggrieved :(
Journey in today was a nightmare because of the M25. Went on the scenic route, via Bicester Village (not that far at all so definitely a place to visit when Michael's got more strength. Already told him, in the New Year on one of our numerous visits back to Oxford, will detour there!!).
Michael had to have a couple of stitches around his peg tube (the one going into his stomach). The tube has a little plastic plate like thing which lies flat against the stomach, and should hold tightly in place, stopping the tube coming out (yuck I know!). The plate is fairly loose and they therefore wanted to hold it with a couple of stitches. This was done in the room with a local anaesthetic (had to have two as first one didn't work entirely). Michael was keen to look at it all being done but meanwhile he's face was a picture (of pain). It obviously didn't hurt but as I know myself, the mind plays funny games. I told him therefore not to look but he wanted to. Have to say, if that size needle was going in me, I would have passed out immediately. Was quite impressed that I did manage to watch the needle going in (not dissimilar to sewing a piece of material!!!!!).
We made it to M&S - nothing enticed Michael but I did buy dinner for tonight. Very conscious now of not going into shops where there's too many people. Thankfully all was relatively quiet. Had a mooch in the other shops and then had a coffee/lemonade and caramel shortbread break. We had to return earlier than expected as we got a call to say they were going to do the scope.
And that leads us back to now. Me - rejected - sitting waiting for Michael.
Justine
read my blog:www.the-transplant-wife.blogspot.com
14 December 2011
Wednesday Evening
Fabulous news, we've found a Marks & Spencer. The Transplant Coordinator told us where the nearest one is - just round the corner. If only we'd asked earlier!!! So excited now for our trip out tomorrow. Nothing like some retail therapy - although not sure window shopping counts as therapy?
The Team have advised Michael that he'll have his biopsy early Friday morning in the hope they can rush the results through by the end of the day. If all ok, maybe he'll be home for the weekend. That would be great, although I'm already preparing for another weekend schlepping to Oxford. No point in being disappointed - again.
The drive home was the worst ever - the Oxford end of the M40 was sleeting and the vision was awful. It's hard enough driving on the motorway in the dark, let alone with the sleet. As long as it's only sleet - I can deal with that. Just don't need snow - although I don't think any is predicted at the moment. Because of the journey, was late to pick up Nath & Lauren from school. They both had after school sport matches - yet again they lost, although for a change Lauren's team actually scored a goal and Nathan's rugby team weren't thrashed.
Tonight Lauren and I watched my niece's show (an unusual take on Finding Nemo - don't think they used the same script writers). The kids all seemed to have a fantastic time on stage - more laughing than anything else. It most certainly took my mind off things. Just made me think - no matter how bad things seem - there's always something worse going on!!!!! (joke really).
Off to bed - too much excitement for one day, and got to prepare myself for tomorrow's trip to M & S. Not sure if Michael's as excited as me.
Night xx
The Team have advised Michael that he'll have his biopsy early Friday morning in the hope they can rush the results through by the end of the day. If all ok, maybe he'll be home for the weekend. That would be great, although I'm already preparing for another weekend schlepping to Oxford. No point in being disappointed - again.
The drive home was the worst ever - the Oxford end of the M40 was sleeting and the vision was awful. It's hard enough driving on the motorway in the dark, let alone with the sleet. As long as it's only sleet - I can deal with that. Just don't need snow - although I don't think any is predicted at the moment. Because of the journey, was late to pick up Nath & Lauren from school. They both had after school sport matches - yet again they lost, although for a change Lauren's team actually scored a goal and Nathan's rugby team weren't thrashed.
Tonight Lauren and I watched my niece's show (an unusual take on Finding Nemo - don't think they used the same script writers). The kids all seemed to have a fantastic time on stage - more laughing than anything else. It most certainly took my mind off things. Just made me think - no matter how bad things seem - there's always something worse going on!!!!! (joke really).
Off to bed - too much excitement for one day, and got to prepare myself for tomorrow's trip to M & S. Not sure if Michael's as excited as me.
Night xx
Wednesday 1pm
Didn't really want to get my hopes up, but was quietly optimistic that Michael would be home today or tomorrow. Alas, no! Biopsy results show there are still some dead cells (rejection). Less than last week but still evident and they want to be cautious. Therefore, they want to do another scope at the end of the week - so unlikely results will be back before Monday.
There are still plenty of healthy cells and apparently new cells are always being produced. We're just waiting for them all to be lovely and healthy. We're both gutted but realise it's best that they're are being over cautious. Michael spoke with the Professor (of transplant dept) yesterday who couldn't stress enough how over cautious they had to be as the bowel can 'go off' very quickly and therefore it's imperative they constantly monitor the progress (ie. Lots of biopsies).
I did query today whether the bloods ever showed rejection. They don't - it's through the biopsy and the output of the stoma.
Michael is soooo very cheesed off. Not quite sure how I can cheer him up - perhaps a trip out to Waitrose. If only there was an M&S nearby :).
Will tell you all about it later - Michael is beyond excited!!
Justine
read my blog:www.the-transplant-wife.blogspot.com
There are still plenty of healthy cells and apparently new cells are always being produced. We're just waiting for them all to be lovely and healthy. We're both gutted but realise it's best that they're are being over cautious. Michael spoke with the Professor (of transplant dept) yesterday who couldn't stress enough how over cautious they had to be as the bowel can 'go off' very quickly and therefore it's imperative they constantly monitor the progress (ie. Lots of biopsies).
I did query today whether the bloods ever showed rejection. They don't - it's through the biopsy and the output of the stoma.
Michael is soooo very cheesed off. Not quite sure how I can cheer him up - perhaps a trip out to Waitrose. If only there was an M&S nearby :).
Will tell you all about it later - Michael is beyond excited!!
Justine
read my blog:www.the-transplant-wife.blogspot.com
12 December 2011
Monday
Guess where I went today? Yep - Oxford. Bit later today as had someone picking up something I'd sold on ebay. Having a mass clear out - it's amazing what people will buy pre-Christmas. Think Michael's a bit concerned that when he does come home, the furniture's going to be gone!!
Apart from the most appalling haircut, Michael looked well. The rushed haircut he had on Thursday was awful - moral to that is always stick to the same barber!!! He's doing ok - just fed up with hospital life and the monotony of it all. Still feeling sick a lot of the time - just have to give that one time.
Was told in the morning that he would be having the scope (biopsy) today - just before I left some of the Team came round but were unsure when the scope would take place. Michael's surgeon is away on his hols (this is quite a rarity) and his second in command would be undertaking the scope. The Team told us that if it wasn't today, it would be Thursday. I was far from happy with this and said, that would mean it would be a further week once we had the results. At this point all the praise I had previously had for Oxford, in comparison to Michael's hospital 'residence' last year, evaporated - it felt like we were back to that constant waiting game before anything happened. Meanwhile, by the time I got back in the car to go home, Michael rang to tell me he was about to be scoped. All praise duly reinstated!!
Michael missed another school show tonight. It was the Year 7 Chanukah Show - short and sweet. Bit of a rush to get there but made it just in time. Just a shame my daughter is so shy (!?!?!?!) - Michael seems to have missed so much in the last year or so :( He'll also miss her Les Mis performance in January as they'll just be too many people in the Theatre :(
Usually takes no more than 2 days for the results of the biopsy - so maybe Michael will be home Wednesday or Thursday. Not going to get my hopes up - will just wait and see. Kids keep asking and all I can tell them is as soon as the Doctors are happy. Maybe they'll just get a nice surprise one day this week on their return from school. Just hope he's home before the kids break up for the hols - would be nice to have a couple of days peace.
Night xx
Apart from the most appalling haircut, Michael looked well. The rushed haircut he had on Thursday was awful - moral to that is always stick to the same barber!!! He's doing ok - just fed up with hospital life and the monotony of it all. Still feeling sick a lot of the time - just have to give that one time.
Was told in the morning that he would be having the scope (biopsy) today - just before I left some of the Team came round but were unsure when the scope would take place. Michael's surgeon is away on his hols (this is quite a rarity) and his second in command would be undertaking the scope. The Team told us that if it wasn't today, it would be Thursday. I was far from happy with this and said, that would mean it would be a further week once we had the results. At this point all the praise I had previously had for Oxford, in comparison to Michael's hospital 'residence' last year, evaporated - it felt like we were back to that constant waiting game before anything happened. Meanwhile, by the time I got back in the car to go home, Michael rang to tell me he was about to be scoped. All praise duly reinstated!!
Michael missed another school show tonight. It was the Year 7 Chanukah Show - short and sweet. Bit of a rush to get there but made it just in time. Just a shame my daughter is so shy (!?!?!?!) - Michael seems to have missed so much in the last year or so :( He'll also miss her Les Mis performance in January as they'll just be too many people in the Theatre :(
Usually takes no more than 2 days for the results of the biopsy - so maybe Michael will be home Wednesday or Thursday. Not going to get my hopes up - will just wait and see. Kids keep asking and all I can tell them is as soon as the Doctors are happy. Maybe they'll just get a nice surprise one day this week on their return from school. Just hope he's home before the kids break up for the hols - would be nice to have a couple of days peace.
Night xx
11 December 2011
Sunday
I wish there was something positive to say but unfortunately the only thing I can say is ....... frustrated, disappointed and depressed. Can't even be bothered to think about what's going on.
Michael's now on 10mg a day of steroids, and will also be put on further immuno-suppressants which will obviously further reduce his immunity. This will be for the long term - once you've had any sort of rejection, that's the usual course. He's likely to have another scope/biopsy on Tuesday and then we'll wait for the results. Not even going to bother telling you how I feel about all of this - wouldn't want to put my depression on you.
There is some fab news though - Michael's been chosen to be a torch bearer for the Olympics. That really is a 'wow'. No details yet but we'll let you know and expect you all there (wherever there is) lining the streets and cheering him along.
Looking forward to giving you some positive news. xx
Michael's now on 10mg a day of steroids, and will also be put on further immuno-suppressants which will obviously further reduce his immunity. This will be for the long term - once you've had any sort of rejection, that's the usual course. He's likely to have another scope/biopsy on Tuesday and then we'll wait for the results. Not even going to bother telling you how I feel about all of this - wouldn't want to put my depression on you.
There is some fab news though - Michael's been chosen to be a torch bearer for the Olympics. That really is a 'wow'. No details yet but we'll let you know and expect you all there (wherever there is) lining the streets and cheering him along.
Looking forward to giving you some positive news. xx
10 December 2011
Saturday Evening
It's been an odd few days with Michael having gone back into hospital. On the one hand his short stay at home was so quick, it's like he's never really been back. On the other hand, I don't really feel like he was ever back and we're just carrying on with hospital mode. Think though this time round is harder for the kids - they've had a 'taster' of Dad at home and now just want him back.
Today was difficult as only Lauren could come and see him in Oxford. Boys have both got colds and, yes, they would have been with him if he was still at home but to sit in the hospital room spreading all their germs would just be irresponsible of me. So we had a girls trip to Oxford. Michael's looking well but is clearly cheesed off. Today was his last kick of steroids. The high dosage is playing havoc with his joints. He's had joint problems for numerous years because of his long periods of steroid use when his Crohn's flared up. It's causing him major pain, particular in his knees. Apparently this is quite normal - even though when we asked what the side effects were from the 500mg steroids, we were told 'nothing'. The pain is generally just after having the dose for which they give him paracetomol. Hopefully now he's finished the 3 day course, the pain will go.
As expected, Michael won't be coming home tomorrow - that would just be too perfect. Of course I'm disappointed (again) but better that they keep him in until they are sure the steroids have worked and everything is improving. His tac levels are good and his kidney function has also settled but another scope is needed to see what effect the steroids have had on the rejection. Not sure yet whether they'll scope on Monday or Tuesday but, whenever, we'll definitely wait for the results before zooming off home. In hindsight, we really shouldn't have gone home before last week's scope (not that it was our decision). I know it would have meant that Michael wouldn't have had the two nights at home that he did but it would also mean that we all wouldn't have been so disappointed and frustrated. In a way, it's Michael that's finding it harder to deal with. He so loved being home, being in his own bed and having the kids around and now he's back in his lonely room.
Generally we've been told with rejection that the first signs are temperature and change in output from the stoma. You know Michael, he never follows the trend. He's had no temperature and it wasn't until yesterday that the output has changed - it increased yesterday, slightly slowing down today. I'm hopeful that perhaps because they noticed the rejection from the biopsy, before Michael got the symptoms, that it will all be sorted quite quickly. I think (so hard to absorb all the information) that Michael will either come home on a smaller dosage of steroids (about 60mg) or a further (as well as the tacrolimus) antirejection/immunosuppressant.
Most disappointing (although sort of obvious) is that this, as Michael's first rejection (and hopefully last), will put his 1 year clear back by 9 weeks. 1 year free of problems basically means we can relax a little more and that Michael should be able to have his stoma reversed. Episodes of rejection means the year has to start again. I don't believe this had ever been discussed before but once mentioned, it seemed (frustratingly) obvious. Also highlighted the severity of what Michael's been through and the path we have ahead of us. Michael should be home soon but it's not as straight forward as being home and carrying on as normal - well not quite yet anyway. Will we now always be looking out for signs of rejection? How scary is all of this :(
Michael's doing ok with eating. Not huge portions or anything, but definitely getting the taste for different things - not just chocolate. He had chicken soup today - didn't think it would taste the same out of a plastic cup, so we even took with us a nice bowl and spoon (Lauren thought I was mad). Had some home made salmon pate (thanks Mum) and crackers, obviously some crisps and some sweets. Whilst he was at home he also tried some salt beef (yummy but a bit heavy), some roast potatoes, trifle, butternut squash soup as well as the usual crackers and cheese. I did have to give him a talking to though - for the short time he was at home, if I mentioned food, he just thought 'crackers and cheese'. As much as I don't want to pressure him in anyway, without any encouragement he'll never try anything and therefore his calorie intake just won't increase. So, I decided the way forward was, particularly at mealtimes, to just place food in front of him and hope for the best. I just wish I had a camera when I placed the bowl of butternut squash soup in front of him - just assumed he wouldn't be having any and I'd given it to the wrong person. Not sure who's worse, him or Lauren!!! Anyway, once he realised there was no one else to feed, he did actually eat it and (I think) enjoyed it. Think this will be the hardest task for me - he knows the whole eating thing is 'mind of matter' and he does want to be a better eater - but it's not going to be easy.
So another week over - and a lot has happened. So much for our family Friday and Saturday night in. There's always next week.
Night xx
Today was difficult as only Lauren could come and see him in Oxford. Boys have both got colds and, yes, they would have been with him if he was still at home but to sit in the hospital room spreading all their germs would just be irresponsible of me. So we had a girls trip to Oxford. Michael's looking well but is clearly cheesed off. Today was his last kick of steroids. The high dosage is playing havoc with his joints. He's had joint problems for numerous years because of his long periods of steroid use when his Crohn's flared up. It's causing him major pain, particular in his knees. Apparently this is quite normal - even though when we asked what the side effects were from the 500mg steroids, we were told 'nothing'. The pain is generally just after having the dose for which they give him paracetomol. Hopefully now he's finished the 3 day course, the pain will go.
As expected, Michael won't be coming home tomorrow - that would just be too perfect. Of course I'm disappointed (again) but better that they keep him in until they are sure the steroids have worked and everything is improving. His tac levels are good and his kidney function has also settled but another scope is needed to see what effect the steroids have had on the rejection. Not sure yet whether they'll scope on Monday or Tuesday but, whenever, we'll definitely wait for the results before zooming off home. In hindsight, we really shouldn't have gone home before last week's scope (not that it was our decision). I know it would have meant that Michael wouldn't have had the two nights at home that he did but it would also mean that we all wouldn't have been so disappointed and frustrated. In a way, it's Michael that's finding it harder to deal with. He so loved being home, being in his own bed and having the kids around and now he's back in his lonely room.
Generally we've been told with rejection that the first signs are temperature and change in output from the stoma. You know Michael, he never follows the trend. He's had no temperature and it wasn't until yesterday that the output has changed - it increased yesterday, slightly slowing down today. I'm hopeful that perhaps because they noticed the rejection from the biopsy, before Michael got the symptoms, that it will all be sorted quite quickly. I think (so hard to absorb all the information) that Michael will either come home on a smaller dosage of steroids (about 60mg) or a further (as well as the tacrolimus) antirejection/immunosuppressant.
Most disappointing (although sort of obvious) is that this, as Michael's first rejection (and hopefully last), will put his 1 year clear back by 9 weeks. 1 year free of problems basically means we can relax a little more and that Michael should be able to have his stoma reversed. Episodes of rejection means the year has to start again. I don't believe this had ever been discussed before but once mentioned, it seemed (frustratingly) obvious. Also highlighted the severity of what Michael's been through and the path we have ahead of us. Michael should be home soon but it's not as straight forward as being home and carrying on as normal - well not quite yet anyway. Will we now always be looking out for signs of rejection? How scary is all of this :(
Michael's doing ok with eating. Not huge portions or anything, but definitely getting the taste for different things - not just chocolate. He had chicken soup today - didn't think it would taste the same out of a plastic cup, so we even took with us a nice bowl and spoon (Lauren thought I was mad). Had some home made salmon pate (thanks Mum) and crackers, obviously some crisps and some sweets. Whilst he was at home he also tried some salt beef (yummy but a bit heavy), some roast potatoes, trifle, butternut squash soup as well as the usual crackers and cheese. I did have to give him a talking to though - for the short time he was at home, if I mentioned food, he just thought 'crackers and cheese'. As much as I don't want to pressure him in anyway, without any encouragement he'll never try anything and therefore his calorie intake just won't increase. So, I decided the way forward was, particularly at mealtimes, to just place food in front of him and hope for the best. I just wish I had a camera when I placed the bowl of butternut squash soup in front of him - just assumed he wouldn't be having any and I'd given it to the wrong person. Not sure who's worse, him or Lauren!!! Anyway, once he realised there was no one else to feed, he did actually eat it and (I think) enjoyed it. Think this will be the hardest task for me - he knows the whole eating thing is 'mind of matter' and he does want to be a better eater - but it's not going to be easy.
So another week over - and a lot has happened. So much for our family Friday and Saturday night in. There's always next week.
Night xx
8 December 2011
Thursday Evening
Sitting here, exhausted and fed up, I'm not actually sure Michael was home at all. Wasn't like we actually had time to slot into any normality. So, I'm here and he's back in Oxford. Yes, it was our choice for him to stay there but it seemed the sensible option. We could have driven back and forth each day for him to have his intravenous steroids but it would have been totally exhausting for Michael and we have to accept that if there are any further complications, the best place to be is there. I'm staying optimistic that he'll have his three day course and then his bloods will confirm all is back on track. I'm actually not sure if he'll have to have another biopsy before he goes home.
Basically, the problem is that the biopsy showed that various parts of the new intestine are rejecting. I believe it's a mild rejection and from what we've discussed in the past, this is not unusual and the high steroids should kick everything back to normal. Can't help wonder whether if he should have had a scope a few weeks back - guess it's normal to start looking at the ifs and whens. It's obviously very worrying but I can't say the Team were running around in a panic so I have to assume it really is all under control.
I didn't stay too long at this hospital. And while I was there I actually fell asleep anyway - so what good was I to Michael? I wanted to get home before the kids arrived home. Didn't feel it was fair to have to tell them on the phone that Michael had gone back into hospital - I wanted to be at home when they got back from school. The boys were amazing - they are so very mature about the whole thing. Of course they were upset but totally understood that it was best for Daddy to go back in. Lauren on the other hand finds it all much harder - she was so excited that Michael was home - even doing her homework sitting next to him. For him then not to be there again was very disappointing for her and although she didn't say this I could tell by her 'mood' that she didn't know how to deal with it all. Thankfully she did have a busy afternoon/evening and didn't have too much time to dwell on things.
Me? I'm beyond disappointed. As always, I'm holding it all together but think that's more because I'm too tired to 'break'. Must admit did have a bit of a scream this afternoon, naturally over something really serious - one of the kids coats fell of the hanger. Think they just thought I was having one of my 'moments' but at least when I got back home the coat was back on the hanger!!
My bed (presently my best friend) is calling me!! Will keep you updated with developments.
Night. x
Basically, the problem is that the biopsy showed that various parts of the new intestine are rejecting. I believe it's a mild rejection and from what we've discussed in the past, this is not unusual and the high steroids should kick everything back to normal. Can't help wonder whether if he should have had a scope a few weeks back - guess it's normal to start looking at the ifs and whens. It's obviously very worrying but I can't say the Team were running around in a panic so I have to assume it really is all under control.
I didn't stay too long at this hospital. And while I was there I actually fell asleep anyway - so what good was I to Michael? I wanted to get home before the kids arrived home. Didn't feel it was fair to have to tell them on the phone that Michael had gone back into hospital - I wanted to be at home when they got back from school. The boys were amazing - they are so very mature about the whole thing. Of course they were upset but totally understood that it was best for Daddy to go back in. Lauren on the other hand finds it all much harder - she was so excited that Michael was home - even doing her homework sitting next to him. For him then not to be there again was very disappointing for her and although she didn't say this I could tell by her 'mood' that she didn't know how to deal with it all. Thankfully she did have a busy afternoon/evening and didn't have too much time to dwell on things.
Me? I'm beyond disappointed. As always, I'm holding it all together but think that's more because I'm too tired to 'break'. Must admit did have a bit of a scream this afternoon, naturally over something really serious - one of the kids coats fell of the hanger. Think they just thought I was having one of my 'moments' but at least when I got back home the coat was back on the hanger!!
My bed (presently my best friend) is calling me!! Will keep you updated with developments.
Night. x
Thursday 1.05 pm
We're back again - different room with a nice big window. Surprisingly nothing's changed since we were last here.
Michael's going to have a 3 day course of steroids intravenously - 500mg each day. To give you an indication of what a huge dose that is - when Michael's Crohn's was at it's worst, the highest dosage would have been no more than 60mg. Obviously loads of bloods tests each day as well to check levels of everything.
Didn't have time to blog yesterday but was going to tell you how life was with Michael at home. Not much point now - back to hospital mode. Hoping by Sunday he'll be back at home and I resume 'life at home'.
Not looking forward to telling the kids later - I always get the tough jobs :(
Justine
read my blog:www.the-transplant-wife.blogspot.com
Thursday
Day has not started well. Hospital called to say they're not happy with biopsy results - shows slight rejection so Michael needs a kick of steroids. Should be for three days but that obviously depends on what effect the steroids have. Michael has decided to stay in rather than trek back and forth each day.
I was much calmer than Michael - the look on his face!! I'll be the positive one - guess this is what we're going to face for the next year.
No rush to get back so he's just having his much needed haircut.
Will keep u posted!
Justine
read my blog:www.the-transplant-wife.blogspot.com
6 December 2011
Tuesday Evening
Well, at last he's home. It was so nice to think this morning that it was going to be my last Oxford routine. The thought didn't last too long as on the way, Michael called to say he already needed to be back for bloods tomorrow and then again on Friday. Guess I can't complain - don't have to go back on Thursday!!
When I arrived, the lady from the company who supplies the pump for Michael's feed was there giving detailed information about the equipment and how to use it. I had a quick catch up session. We did query a few bits of information - we had been told (not mentioning any names - but you know who you are!!!) that if the tube became clogged, putting coca cola down it often cleared any problems. We were told that soda water was better as coke tended to corrode the tube!! Lucky we asked - although coke has now been advised by two other people. Anyway compared to tpn, it's all fairly simple. Same idea, has the feed overnight but if he needs to go out, there's a little backpack for the feed to go in (a streamlined version of the large tpn bag). All sorted, and left with loads of supplies.
Next was a scope. He actually hadn't had one about 3 weeks. Guess that's good that they didn't feel the need. Anyway, a biopsy was taken and we'll wait for the results. Maybe they'll have them by the time we return on Friday? Once they've scoped, a new stoma bag has to be put on - Michael's doing amazingly and coping really well with this now. Seems to have overcome his 'problem' with the whole thing. When changing the bag there's a 'base plate' that goes on first. Michael has a template which was cut a while back to fit perfectly. This template is used each time a new base plate is needed. After his scope, I cut the base plate using the template but stupidly didn't put the template away immediately. We had to laugh when one of the newer nurses picked it up, and tore it apart. He had absolutely no idea that we needed it. Normally I wouldn't mention such a faux par in the blog, but as soon as he did it I did tell him I couldn't resist blogging that one (sorry!). Thankfully no harm done - and at least Michael feels confident enough with the whole thing that he could laugh as well. He does now have a new template.
They then asked us to just hang around for an hour - apparently they like you to 'rest' after this procedure. By the time we'd checked we had everything, loaded the car up and said our goodbyes, the hour was already gone. As ecstatic as we were to leave (although I'm sure Michael was much more nervous than me), it was very sad to say goodbye to such a wonderful team. I felt quite emotional because we really had been on a long journey together - from the moment we had the call and arrived at the hospital in the middle of the night, we felt that we were part of a very special caring team and all of sudden it was that bold step of leaving. On the other hand, we will be back tomorrow!!
Michael has to return tomorrow for more bloods. Basically his tac levels (tacromilus - anti rejection) are still too high - this means he has the shakes (not fantastic now that he's back to self medicating his own intravenous drugs again :)) and it also means his kidney function is not perfect. Therefore this needs to be closely monitored. It would obviously have been easier for him to stay another night but he'd already prepared himself to come home today and I don't think there was anyway I could console the kids if they came back from school to find Daddy not at home. So back we go tomorrow. They did ask if we could get there fore 8.30am - I did explain this was impossible as it would mean we'd have to leave home about 6am because of the traffic at that time. We'll aim to leave at 9am and hopefully won't have to wait too long - now he's not an inpatient we have to 'slum it' like everyone else in the clinic and just wait our turn. Then it's back again on Friday for more bloods. I know he has his weekly appointment next Thursday but I'm not sure if we'll have to return before then for any more bloods - assuming that will depend on Friday's results.
Because of the kidney function, I have been subtly giving him drinks the whole time. I know if I didn't do that he'd never pick up a glass at all. We did all sit down together for dinner tonight - he did manage two fish goujon. Whilst writing I've just realised I didn't 'offer' him the remainder of the trifle that he started when we got home this afternoon. I'm just going to have to get into the routine of constantly (and gently) reminding him of food. Funny how I when I walk into the kitchen I'm always drawn to the fridge and feel it's somehow rude not to eat something. Michael on the other hand doesn't have that weakness - think we need to trade eating habits!!
So my lovely large bed doesn't seem so large now that Michael's back home. He's just fallen asleep - which is great because I think he was worried he wouldn't be able to get comfortable. In hospital he was using our V shaped cushion which propped him up quite high as he said he felt more comfortable. When we got home I put the cushion outside for an airing - trouble is I forgot about it and now it's also had a wash. So he had to do without that and just has two pillows - is lying fairly flat and has managed to nod off. Just hoping for his sake that he does manage to sleep through the night. The great thing about this feed that he's now attached to is that it doesn't make you pee the whole time. That was a major problem with tpn - as tired as he could be, he'd always have to get up to go to the loo. It's been a long time since Michael's slept a full night sleep - so I do hope tonight will be the start.
It's been lovely having Michael back, although from the moment we arrived home, the time we spent together was different. When we were at the hospital together we had no distractions but once your home, everything changes. Before the kids came home, we tried to sort out where all the supplies should be stored. I really was against all the wheelie drawers, which I'd put in the garage some weeks ago, coming back into the bedroom as they took up so much room. Once that was sorted, kids were home, after school activities, schlepping and all too soon it was bedtime and we hadn't really spoken. Guess that's life. Have to say did feel quite rejected when the boys came home. They rang the doorbell and were fighting to get in first to see Daddy. Me? I was completely ignored.
Can't say I'm looking forward to the drive back again tomorrow. Just hoping we won't have to be there too long.
Thank you for all your lovely messages of support for Michael's 'homecoming'.
Night xx
When I arrived, the lady from the company who supplies the pump for Michael's feed was there giving detailed information about the equipment and how to use it. I had a quick catch up session. We did query a few bits of information - we had been told (not mentioning any names - but you know who you are!!!) that if the tube became clogged, putting coca cola down it often cleared any problems. We were told that soda water was better as coke tended to corrode the tube!! Lucky we asked - although coke has now been advised by two other people. Anyway compared to tpn, it's all fairly simple. Same idea, has the feed overnight but if he needs to go out, there's a little backpack for the feed to go in (a streamlined version of the large tpn bag). All sorted, and left with loads of supplies.
Next was a scope. He actually hadn't had one about 3 weeks. Guess that's good that they didn't feel the need. Anyway, a biopsy was taken and we'll wait for the results. Maybe they'll have them by the time we return on Friday? Once they've scoped, a new stoma bag has to be put on - Michael's doing amazingly and coping really well with this now. Seems to have overcome his 'problem' with the whole thing. When changing the bag there's a 'base plate' that goes on first. Michael has a template which was cut a while back to fit perfectly. This template is used each time a new base plate is needed. After his scope, I cut the base plate using the template but stupidly didn't put the template away immediately. We had to laugh when one of the newer nurses picked it up, and tore it apart. He had absolutely no idea that we needed it. Normally I wouldn't mention such a faux par in the blog, but as soon as he did it I did tell him I couldn't resist blogging that one (sorry!). Thankfully no harm done - and at least Michael feels confident enough with the whole thing that he could laugh as well. He does now have a new template.
They then asked us to just hang around for an hour - apparently they like you to 'rest' after this procedure. By the time we'd checked we had everything, loaded the car up and said our goodbyes, the hour was already gone. As ecstatic as we were to leave (although I'm sure Michael was much more nervous than me), it was very sad to say goodbye to such a wonderful team. I felt quite emotional because we really had been on a long journey together - from the moment we had the call and arrived at the hospital in the middle of the night, we felt that we were part of a very special caring team and all of sudden it was that bold step of leaving. On the other hand, we will be back tomorrow!!
Michael has to return tomorrow for more bloods. Basically his tac levels (tacromilus - anti rejection) are still too high - this means he has the shakes (not fantastic now that he's back to self medicating his own intravenous drugs again :)) and it also means his kidney function is not perfect. Therefore this needs to be closely monitored. It would obviously have been easier for him to stay another night but he'd already prepared himself to come home today and I don't think there was anyway I could console the kids if they came back from school to find Daddy not at home. So back we go tomorrow. They did ask if we could get there fore 8.30am - I did explain this was impossible as it would mean we'd have to leave home about 6am because of the traffic at that time. We'll aim to leave at 9am and hopefully won't have to wait too long - now he's not an inpatient we have to 'slum it' like everyone else in the clinic and just wait our turn. Then it's back again on Friday for more bloods. I know he has his weekly appointment next Thursday but I'm not sure if we'll have to return before then for any more bloods - assuming that will depend on Friday's results.
Because of the kidney function, I have been subtly giving him drinks the whole time. I know if I didn't do that he'd never pick up a glass at all. We did all sit down together for dinner tonight - he did manage two fish goujon. Whilst writing I've just realised I didn't 'offer' him the remainder of the trifle that he started when we got home this afternoon. I'm just going to have to get into the routine of constantly (and gently) reminding him of food. Funny how I when I walk into the kitchen I'm always drawn to the fridge and feel it's somehow rude not to eat something. Michael on the other hand doesn't have that weakness - think we need to trade eating habits!!
So my lovely large bed doesn't seem so large now that Michael's back home. He's just fallen asleep - which is great because I think he was worried he wouldn't be able to get comfortable. In hospital he was using our V shaped cushion which propped him up quite high as he said he felt more comfortable. When we got home I put the cushion outside for an airing - trouble is I forgot about it and now it's also had a wash. So he had to do without that and just has two pillows - is lying fairly flat and has managed to nod off. Just hoping for his sake that he does manage to sleep through the night. The great thing about this feed that he's now attached to is that it doesn't make you pee the whole time. That was a major problem with tpn - as tired as he could be, he'd always have to get up to go to the loo. It's been a long time since Michael's slept a full night sleep - so I do hope tonight will be the start.
It's been lovely having Michael back, although from the moment we arrived home, the time we spent together was different. When we were at the hospital together we had no distractions but once your home, everything changes. Before the kids came home, we tried to sort out where all the supplies should be stored. I really was against all the wheelie drawers, which I'd put in the garage some weeks ago, coming back into the bedroom as they took up so much room. Once that was sorted, kids were home, after school activities, schlepping and all too soon it was bedtime and we hadn't really spoken. Guess that's life. Have to say did feel quite rejected when the boys came home. They rang the doorbell and were fighting to get in first to see Daddy. Me? I was completely ignored.
Can't say I'm looking forward to the drive back again tomorrow. Just hoping we won't have to be there too long.
Thank you for all your lovely messages of support for Michael's 'homecoming'.
Night xx
5 December 2011
8 weeks and 72 hours later......
At last Michael is coming home. Seems a bit of a dream now the whole thing from our trip to the States in January to find out Michael's only option was a transplant, to Oxford, to THE call and then the last 8 weeks and 72 hours. With Michael now looking so well and being more like his old self, it's hard to imagine those awful days at the beginning, post op, sitting with him, watching him in pain and having numerous tests and set backs. Guess it's all a bit like child birth - you just quickly forget how painful (understatement!) it all is and just keep progressing and all the tough bits don't seem as bad. Although, I guess if you ask Michael, I think he may think differently. And I although I went through childbirth twice more I'm not sure Michael would ever want to go through all that again.
Thankfully, it's full steam ahead and I can only pray that his recovery keeps going as positively. All his meds and feed are ready for discharge. Only thing left is for the enteral feed nurse to give us a lesson on keeping the tubes clean and generally how to look after them. Not sure what else needs doing tomorrow but they guesstimate that we'll be ready to depart around lunchtime. Now lunchtime on the ward is usually 12noon - I'm sure we won't be ready to leave that early but you never know. We know that we'll be back once a week for blood tests and every other week he'll have a scope (camera through the stoma to check the bowel). Doing that drive only once a week will be an absolute doddle. Only query we have before he leaves is whether he needs to take one of his drugs he was taking prior to his op. He was on a calcium tablets as his bone density hasn't been amazing because of his previous steriod use (steroids are known for causing bone weakness). The pharmacist advised today that his calcium levels are fine but I didn't think it was his calcium levels that were a problem but his bone weakness. Michael will check with the doctors again tomorrow (if he remembers!).
Shame is Michael's now in the nicest room he's been in so far. He was moved on Thursday as someone else was in need of the monitor in his room. He now has a lovely bright room with a double floor to ceiling window - beautifully light, but unfortunately all that light also shows up all the dirt in the room!! Apparently there's been some sort of audit and questions being asked of patients. Michael's complaint?? The room and bathroom are not cleaned nearly enough or thoroughly. Therefore yesterday he was thrown out his room whilst his room had a deep clean. I wouldn't mind, but he made the same complaint at UCH last year and his area there also had a thorough cleaning. Think maybe I should give the house a spring clean before his return. Can see him now walking around with his clipboard and pen. Feeling a little bit nervous :)
We did have our daily trip out today - nowhere very exciting. Having struggled for the last few weeks to squeeze that wheelchair into Michael's little car, I wasn't disappointed that today was the last. When he's home, no wheelchair that's for sure - it's time to build up his energy. We'll start slowly and who knows how long it takes but eventually he'll manage to get round our whole road in one go.
I think Michael's starting his blog soon - it's a shame he wasn't up to writing earlier on because I know if I hadn't written this blog as we were going through everything, I would have forgotten an awful lot. Perhaps when he reads my blog from the last eight weeks, it may jog his memory as to what he was going through at certain times. It's been a great way of me keeping everyone informed but to be honest it's also been extremely therapeutic - bit like talking to oneself. I will continue - I have a feeling life is about to get more 'fun' and although Michael, in his usual way, is being an amazing patient, I think the next few months are going to really test us. Previously Michael has come home from hospital and slowly, day by day, has recuperated until he can return to normal life (well as normal as his life ever was with Crohn's disease). It's not quite the same after transplant - but we'll learn as go along and I think together we're a pretty strong team and we'll deal with what's thrown at us. It may actually be that at times I'll feel like throwing something at Michael but I'm sure he'll deal with that as well.
As you can imagine, the kids are so excited about tomorrow. I did tell them this morning again that we still weren't sure if everything was on track for Tuesday so they were delighted when I got home and told them it was. Lauren has already said she wants Daddy to open the door when she gets home. Lucky Waffle gets him all to himself until the kids return - the two of them can compare scars.
I really am so excited. May sound stupid but I feel like some sort of weight has been lifted. Think I may have a stupid grin on my face as I write this but his homecoming really is a big deal - it's just a shame he's not actually up to celebrating.
Well - time for bed. Early start for me so I can clean the house from top to toe.
Night xx
Thankfully, it's full steam ahead and I can only pray that his recovery keeps going as positively. All his meds and feed are ready for discharge. Only thing left is for the enteral feed nurse to give us a lesson on keeping the tubes clean and generally how to look after them. Not sure what else needs doing tomorrow but they guesstimate that we'll be ready to depart around lunchtime. Now lunchtime on the ward is usually 12noon - I'm sure we won't be ready to leave that early but you never know. We know that we'll be back once a week for blood tests and every other week he'll have a scope (camera through the stoma to check the bowel). Doing that drive only once a week will be an absolute doddle. Only query we have before he leaves is whether he needs to take one of his drugs he was taking prior to his op. He was on a calcium tablets as his bone density hasn't been amazing because of his previous steriod use (steroids are known for causing bone weakness). The pharmacist advised today that his calcium levels are fine but I didn't think it was his calcium levels that were a problem but his bone weakness. Michael will check with the doctors again tomorrow (if he remembers!).
Shame is Michael's now in the nicest room he's been in so far. He was moved on Thursday as someone else was in need of the monitor in his room. He now has a lovely bright room with a double floor to ceiling window - beautifully light, but unfortunately all that light also shows up all the dirt in the room!! Apparently there's been some sort of audit and questions being asked of patients. Michael's complaint?? The room and bathroom are not cleaned nearly enough or thoroughly. Therefore yesterday he was thrown out his room whilst his room had a deep clean. I wouldn't mind, but he made the same complaint at UCH last year and his area there also had a thorough cleaning. Think maybe I should give the house a spring clean before his return. Can see him now walking around with his clipboard and pen. Feeling a little bit nervous :)
We did have our daily trip out today - nowhere very exciting. Having struggled for the last few weeks to squeeze that wheelchair into Michael's little car, I wasn't disappointed that today was the last. When he's home, no wheelchair that's for sure - it's time to build up his energy. We'll start slowly and who knows how long it takes but eventually he'll manage to get round our whole road in one go.
I think Michael's starting his blog soon - it's a shame he wasn't up to writing earlier on because I know if I hadn't written this blog as we were going through everything, I would have forgotten an awful lot. Perhaps when he reads my blog from the last eight weeks, it may jog his memory as to what he was going through at certain times. It's been a great way of me keeping everyone informed but to be honest it's also been extremely therapeutic - bit like talking to oneself. I will continue - I have a feeling life is about to get more 'fun' and although Michael, in his usual way, is being an amazing patient, I think the next few months are going to really test us. Previously Michael has come home from hospital and slowly, day by day, has recuperated until he can return to normal life (well as normal as his life ever was with Crohn's disease). It's not quite the same after transplant - but we'll learn as go along and I think together we're a pretty strong team and we'll deal with what's thrown at us. It may actually be that at times I'll feel like throwing something at Michael but I'm sure he'll deal with that as well.
As you can imagine, the kids are so excited about tomorrow. I did tell them this morning again that we still weren't sure if everything was on track for Tuesday so they were delighted when I got home and told them it was. Lauren has already said she wants Daddy to open the door when she gets home. Lucky Waffle gets him all to himself until the kids return - the two of them can compare scars.
I really am so excited. May sound stupid but I feel like some sort of weight has been lifted. Think I may have a stupid grin on my face as I write this but his homecoming really is a big deal - it's just a shame he's not actually up to celebrating.
Well - time for bed. Early start for me so I can clean the house from top to toe.
Night xx
3 December 2011
Saturday
Thankfully I was feeling up to taking the kids to see Michael today. Still feel like a need a few weeks on a desert island - but no such luck :(
Michael looked really good today. Definitely in need of a haircut - one of the first things he'll have done when he gets home. We had a trip out to the shops today. I didn't have my car so we couldn't drive as Michael's car is only a four seater and we couldn't all fit in, as well as the wheelchair. So we all took it in turns to push Michael. It was about a 25 min walk both way but it was a lovely fresh day out so really good to get some air. We were all boiling by the time we returned (from all the pushing) and poor Michael was freezing. Well that answered a question my mum asked yesterday 'is Michael still feeling the cold as much as he was before the op?'
A few boxes of food have now been delivered to his room ready for his departure - I'm hoping everything else will also be organised in time for Tuesday.
Had to laugh - Lauren went to the fridge to get some cheese for Michael. We didn't take much notice as to how much noise she made clomping back to the room, but obviously she must have been quite loud as one of the nurses came in to tell her not to run in a hospital because it panics everyone into thinking there's an emergency. Obviously their hearing is tuned into such things whereas we don't even notice our heavy footed daughter any more!!
Kids were so happy when they said goodbye, knowing that the next time they see Daddy will be at home. Stressed again to them that as much as we want it to be Tuesday, everything may not have been sorted. I do so hope it is - please please let it all be organised.
Michael's hoping to start blogging when he's back home and has a bit more energy. I guess I'll have to let him read by blog - he hasn't read anything at all so it will be quite enlightening, and embarrassing for him no doubt!!
Hoping this time next week, Michael will be settled and we'll be relaxing together - have a feeling none of the kids will be out next Saturday evening.
It's 8 weeks since the op and it's lovely to think that he's nearly home!!
Night x
PS. Thanks so much to his Twitter friends - he was really thrilled to receive your card and good wishes. Hopefully he'll be twittering again soon.
Michael looked really good today. Definitely in need of a haircut - one of the first things he'll have done when he gets home. We had a trip out to the shops today. I didn't have my car so we couldn't drive as Michael's car is only a four seater and we couldn't all fit in, as well as the wheelchair. So we all took it in turns to push Michael. It was about a 25 min walk both way but it was a lovely fresh day out so really good to get some air. We were all boiling by the time we returned (from all the pushing) and poor Michael was freezing. Well that answered a question my mum asked yesterday 'is Michael still feeling the cold as much as he was before the op?'
A few boxes of food have now been delivered to his room ready for his departure - I'm hoping everything else will also be organised in time for Tuesday.
Had to laugh - Lauren went to the fridge to get some cheese for Michael. We didn't take much notice as to how much noise she made clomping back to the room, but obviously she must have been quite loud as one of the nurses came in to tell her not to run in a hospital because it panics everyone into thinking there's an emergency. Obviously their hearing is tuned into such things whereas we don't even notice our heavy footed daughter any more!!
Kids were so happy when they said goodbye, knowing that the next time they see Daddy will be at home. Stressed again to them that as much as we want it to be Tuesday, everything may not have been sorted. I do so hope it is - please please let it all be organised.
Michael's hoping to start blogging when he's back home and has a bit more energy. I guess I'll have to let him read by blog - he hasn't read anything at all so it will be quite enlightening, and embarrassing for him no doubt!!
Hoping this time next week, Michael will be settled and we'll be relaxing together - have a feeling none of the kids will be out next Saturday evening.
It's 8 weeks since the op and it's lovely to think that he's nearly home!!
Night x
PS. Thanks so much to his Twitter friends - he was really thrilled to receive your card and good wishes. Hopefully he'll be twittering again soon.
2 December 2011
Friday
Longest time that I haven't been to Oxford. Always planned not to be at the hospital on Wednesday and Thursday but last night I went to bed feeling quite lousy and then didn't really feel any better this morning. I managed to wake Lauren up (always taking the longest to get ready, she's up before the boys) and she then got dressed and ensured the boys got out of bed. I climbed back into bed - don't think I've ever done that but really didn't have the energy to do anything.
The kids were so sweet, all coming in before they left. They're not really used to me being the one who's unwell. Once they'd left, I was too awake to go back to sleep - just stayed in bed, with the electric blanket on, and read .... and read.... and read. Just so lovely to do absolutely nothing. Didn't really feel like food so just cups of tea for me. Then a lovely long bath and more reading. Not sure I've ever had a morning like that but honestly didn't have the energy for anything else. By the time I ventured out, it was almost lunchtime - just a walk to the shops to get some freshair for both me and Waffle. Normally I would always find something that needed doing in the house (or the garden) but today, absolutely nothing was getting done.
All too soon the kids were home - only 5 extra kids as well. Whilst writing, I'm actually hidden away in my bedroom!!! Can't hear anything too bad happening downstairs.
Michael had a rough day yesterday. Felt sicker than usual so they decided not to move his antisickness to his tube. Just one of those days, but as they explained today, if he gets one of those days at home, that's when we'd find ourselves back in Oxford. Better day today and they've have now changed the antisickness so when I speak to him later I'll find out if there was any different effect. Spoke to the Coordinator who told him she's unsure yet whether he'll be called to clinic once or twice at week initially but obviously this is all the stuff we'll find out before he comes home. Hoping we're still good for Tuessday but I get the feeling everything takes longer to organise than expected - the kids will be devastated if it's not Tuesday. As much as I stressed to them that it wasn't a definite, they've obviously been counting the days. Nothing I can do about it - we'll just see what transpires.
Meanwhile, Michael's extra sickness yesterday made me realise that it's no going to be plane sailing when he's home. I never expected it to but I guess it just highlighted the fact that there are going to be plenty of times when Michael's feeling particularly worse and we'll land up having to trek back to Oxford. Maybe the last 8 weeks have actually been the easy bit. Can't really worry about it all too much and, as always, we'll just cope. Think that part of it will perhaps be harder for the kids than what they've experienced so far :(
And more specifics on 'crowds'. Over 20 people in a room is a 'crowd' and therefore Michael's at too much risk of catching something. We can go to a indoor shopping centre but only at quiet times.
Still having problems keeping Michael's tac (tacromlimus) levels right. Keeps going up and down and at the moment he's got the shakes from it all. Nothing to panic about - some people do have this. It will just take some time to sort the levels out so he's more stable.
Hoping I'll be feeling up to to taking the kids to Oxford tomorrow.
It's already dark outside and I would be quite happy to change into my pjs and climb under the duvet. No such luck!! Roll on bedtime xx
The kids were so sweet, all coming in before they left. They're not really used to me being the one who's unwell. Once they'd left, I was too awake to go back to sleep - just stayed in bed, with the electric blanket on, and read .... and read.... and read. Just so lovely to do absolutely nothing. Didn't really feel like food so just cups of tea for me. Then a lovely long bath and more reading. Not sure I've ever had a morning like that but honestly didn't have the energy for anything else. By the time I ventured out, it was almost lunchtime - just a walk to the shops to get some freshair for both me and Waffle. Normally I would always find something that needed doing in the house (or the garden) but today, absolutely nothing was getting done.
All too soon the kids were home - only 5 extra kids as well. Whilst writing, I'm actually hidden away in my bedroom!!! Can't hear anything too bad happening downstairs.
Michael had a rough day yesterday. Felt sicker than usual so they decided not to move his antisickness to his tube. Just one of those days, but as they explained today, if he gets one of those days at home, that's when we'd find ourselves back in Oxford. Better day today and they've have now changed the antisickness so when I speak to him later I'll find out if there was any different effect. Spoke to the Coordinator who told him she's unsure yet whether he'll be called to clinic once or twice at week initially but obviously this is all the stuff we'll find out before he comes home. Hoping we're still good for Tuessday but I get the feeling everything takes longer to organise than expected - the kids will be devastated if it's not Tuesday. As much as I stressed to them that it wasn't a definite, they've obviously been counting the days. Nothing I can do about it - we'll just see what transpires.
Meanwhile, Michael's extra sickness yesterday made me realise that it's no going to be plane sailing when he's home. I never expected it to but I guess it just highlighted the fact that there are going to be plenty of times when Michael's feeling particularly worse and we'll land up having to trek back to Oxford. Maybe the last 8 weeks have actually been the easy bit. Can't really worry about it all too much and, as always, we'll just cope. Think that part of it will perhaps be harder for the kids than what they've experienced so far :(
And more specifics on 'crowds'. Over 20 people in a room is a 'crowd' and therefore Michael's at too much risk of catching something. We can go to a indoor shopping centre but only at quiet times.
Still having problems keeping Michael's tac (tacromlimus) levels right. Keeps going up and down and at the moment he's got the shakes from it all. Nothing to panic about - some people do have this. It will just take some time to sort the levels out so he's more stable.
Hoping I'll be feeling up to to taking the kids to Oxford tomorrow.
It's already dark outside and I would be quite happy to change into my pjs and climb under the duvet. No such luck!! Roll on bedtime xx
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